The Little Men - Erin's poetic portrayal of life with Endo

The Little Men

The little people have returned,

Marching up and down my veins.

Settled up against my bones

Beginning their attempts of destruction.

It’s a dull pain to start,

I barely noticed they have sneaked their way in.

I was asleep when they showed up.

It’s like an unscatchable itch under my skin. One in which you wish you had a fork to dig through the skin and flesh, into the torment where the pain resides.

A steady rush to the end of my nerves sets off a spark.

Like a man with a welding torch, he annoys me by flicking it on and off.

I moan in anguish.

I must not let the pain drive me mad.

I cannot be touched now.

My nerves are inflamed.

My hands swell, my ankles grow.

Encouraged I return to bed.

I find the pill bottles waiting there.

So many of them lined up like soldiers awaiting battle.

I look at them back and forth.

Which will numb?

Which ones are the fastest?

Which will poison the men?

Will they always be drilling inside me?

Pacing away, driving me nuts with pain?

I pop one in my mouth and swallow hard.

I have no energy to move from bed and grab some water.

I build saliva in my mouth to push the morphine down.

I picked morphine from the rest.

Morphine-the strongest of my army.

The coating melts on my tongue, bitterness and chalk.

Swallowed it becomes stuck.

I massage my throat, pushing it down.

I push it down.

That bitterness, it burns my throat.

I choke a bit.

The first hit.

The subtle high.

It spreads from the head down throughout my wretched body.

I call it warm light.

Soothing and constant it fills my veins, washes out the construction men, their tools, their mess.

For a few minutes I feel normal, minus the high of course.

The high.

Nothing is like it.

Nothing can top it to a person who lives with daily pain.

It is the only reassuring thing one who lives like possess.

Without it, certainly one would wish to die.

Stiff as a board your're afraid to move.

Afraid if you do the pain will return.

Motionless I stare at the ceiling.

When will it end?

It begins to return, that reoccurring dull pain.

I pop another and another…

It continues.

I am alone and all I do is think.

Is this my life?

If I take one more will this nauseating pain end? Or have I been left here to suffer silently?

Over and over again, the same thoughts, the same pills, the same battle.

Eventually, the pain will end, but it will be back shortly.

Like an addicted or love smitten court, it will return ambitiously determined.

The little men with their tools, noise and destruction.

The construction site, my body.

Their mission: to be noticed.

I muster the energy to move again.

The fight is over.

The dead silence hits me.

I start smiling again, but for how long?

I am always on guard, waiting.

Watching for the signs of their return.

The question is when?

"Endometriosis hurts young women - like my stepdaughter Erin Ross Coward - more awareness needed"

My stepfather Bill Tieleman wrote about endometriosis and my situation in his weekly Tuesday column in 24 hours Vancouver newspaper and The Tyee online, as well as his blog.

I really appreciate it - and all the supportive comments, emails and responses I got, many from complete strangers who want to help or just to offer their best wishes.

Here's the full column - your comments are welcome here and at The Tyee and Bill's blog.  And there are live links to some good resources in the column as well - Erin Ross Coward



Shirley Ross, Erin Ross Coward & Bill Tieleman

 Find Out About Endometriosis

This invisible disease that badly hurts young women needs more attention.

 Bill Tieleman's 24 hours/The Tyee column

Tuesday March 6, 2012

By Bill Tieleman

"It is not a woman's lot to suffer." 

- Actress Susan Sarandon

Opium, intravenous morphine, oxycontin, naproxen, Lyrica, hydromorphone, fentanyl, Lupron, cesamet, Visanne, cipralex, clonazepam and ibuprofen.

These are just some of the drugs my stepdaughter Erin Ross Coward has taken over the past few years.

But Erin isn't addicted to drugs -- they were all doctor-prescribed to relieve the extreme and chronic pain of her endometriosis.

March is the month dedicated to awareness about this surprisingly common but mostly unknown chronic illness that affects one in 10 women in varying degrees.

Endometriosis occurs when tissue like that which lines a woman's uterus grows elsewhere in her body, usually the abdomen.

That tissue responds to the menstrual cycle like the uterus tissue does -- it builds up, breaks down and sheds.

But unlike during a period, this blood and tissue have no way to leave the body, resulting in painful inflammation and sometimes internal scarring or adhesions.

Many women mistakenly believe it is just "normal" menstrual pain and aren't diagnosed, but for others like Erin, the symptoms are far more severe.

And like many with endometriosis, Erin also suffers from fibromyalgia -- a disorder that causes widespread musculoskeletal pain and fatigue.

Surgeries, injections, recurring agony

At just 27 years old, Erin has undergone five separate surgeries to remove endometrium tissue attaching itself to her internal cavities and even organs, making it still more challenging to remove. Each surgery has left her recovering for weeks afterward.

Erin has also made literally countless trips to the hospital for morphine injections when the pain is unmanageable with prescription drugs, to her doctor, gynecologist, massage therapist, acupuncturist and naturopath seeking relief. 

The B.C. Medical Plan does not cover all of her treatments, making endometriosis expensive as well as painful.

Erin's pain is visceral and debilitating. The other results of endometriosis include serious fatigue, irregular and heavy bleeding, nausea, dizziness and depression.

About 30 to 40 per cent of women with endometriosis are unable to have children, says the World Endometriosis Research Foundation.

As Erin's parents, my wife Shirley Ross and I feel a very different pain from watching her suffer -- emotional and intense, with a sense of helplessness.

The chronic pain hurts us all. And there is no solution.

Out of the shadows

In the past doctors believed either pregnancy or a hysterectomy would cure endometriosis but that has been disproven. Pain management is the only solution.

Erin describes her endometriosis this way: "It's like having the worst period you've ever had, every day of your life."

And yet Erin is outwardly a beautiful young woman -- which makes it even harder for people to understand her "invisible" illness.

Too often someone has dismissed her devastating condition by saying, "You look fine to me."

Erin has bravely not only faced the disease by trying her best to live a normal live but also writes publicly about it on her blog End Endo BC.

"I struggle to get out of bed, to hold a coffee mug without spilling or dropping it and even the simple task of dressing yourself can exhaust you," Erin wrote Saturday. "I am not bitter about living this way, I'd rather live then be dead, so I keep trying. Keeping my head above water is the plan."

Ironically, just as endometriosis awareness month started, Erin's plans to become a teacher were put on hold. 

Erin was forced to take a medical leave from the University of B.C. because she is in too much pain to attend classes, so she must try to regain her health before resuming studies.

It's another unfair blow -- but Erin completed her bachelor of arts degree previously while fighting the illness, and plans to return.

Actresses Susan Sarandon and Padma Lakshmi are just two famous women who are speaking out about their battles with endometriosis and the need for more awareness, research and support for those who suffer from it.

As Lakshmi, host of Bravo TV's Top Chef and a former supermodel says, it's difficult for women to talk about the illness because of its intimate nature:

"Endometriosis still isn't openly discussed. It's at the stage that breast cancer was many years ago," Lakshmi says. "It's never pleasant talking about such a personal issue."

Learn more, hope for a cure

We remain hopeful for a cure or just better pain relief for women like Erin who suffer from the most severe form of endometriosis.

"Too many are affected by this terrible disease and too many of us are not being loud enough to bring attention to it when it affects one in ten women," Erin writes.

But for now endometriosis is still a hurtful illness that deprives so many women of their ability to live life fully, have children and exist without pain.

So spare a moment to find out about endometriosis. 

With so many affected, everyone knows a woman like Erin who needs your support. 

.

Erin speaks out on Endometriosis!

It has been a tough start to 2012.

As most know from my blog I am a tough cookie, bring on the pain and I'll take it on like a trooper. I have never given up at any battle and leaving school is not something I am surrendering to that easily. Eight courses and a practicum is tough enough on a normal person, add three chronic pain diseases and it becomes an impossible trek up a steep mountain with obstacles, powerful rain and sheets of snow. I had no choice but to stop climbing that mountain, it was not safe for my health.

Somewhere along that journey I seem to lose myself within school and the pain I fought daily that I barely recognize myself when I took a step back and left school. Getting lost in something you love is one thing but losing who you are because you lost joy in basic life, social and family and what about that time you reserve for yourself? It became too much. I had given up all for school.

Too many times had I been told: "How are you going to be a teacher since your sick?" The weight of it all, resting on my shoulders was too much. Its so hard to look up when so much stuff is bringing you down.

Well, I am still smiling and taking this in strides. I will not give up on what dreams I still have even if I may be sick and may never get better. Isn't true you look so much better when you smile? So, that's what I am going to do through all this. This is not the end, but the start of something else. I have to re define myself and find that part of me I lost.

School will always be there and I hope that someday I will return and find steady footing within it but as of now, I have to once again look at my health.

When you have three chronic pain diseases, everyday is a struggle. I struggle to get out of bed, to hold a coffee mug without spilling or dropping it and even the simple task of dressing yourself can exhaust you. I am not bitter about living this way, I'd rather live then be dead, so I keep trying. Keeping my head above water is the plan. Maybe I bit off too much to chew but one must always try and I had a dream and the drive.

March is the month in which we try and raise awareness about endometriosis and I hope all of you will do your part, wear yellow, share information with friends or sport a yellow ribbon.

Too many are affected by this terrible disease and too many of us are not being loud enough to bring attention to it when it affects one in ten women.

Please try and give a bit of your time this month to raising awareness. I know I don't want to live like this forever, but if it is in the cards I will make do.

What can I do?

When put in an impossible place or circumstance all one can do is dream big and believe that things can change, that one day the pain will be gone and maybe I will awake to a new world full of endless possibilities, all that I am free to partake in without carring around a disease that seems to single me out.

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March is Endometriosis Month! Please support all the women you know who suffer from this chronic disease by wearing a yellow T-shirt and adding your comments to this blog!

Erin enjoying the sun last summer

Since Erin's last post in October a number of events have occured. She tried a new hormone, just released in Canada this fall, but had to stop after one month as she developed the worst side-effects, including carpal tunnel syndrome and numbness in her hands and arms. This has only intensified the fibro symptoms and she has been playing with a combination of narcotics, anti-inflammarory drugs among others with very little relief. Reverting to her old hormones has also intensified the endo pain and bleeding.

But regardless of her daily pain, she was able to complete her first term at UBC in the BEd program. Unfortunately, she has had to withdraw from school this month and her love for teaching and children is on hold.

With the weekly support of her Gp, massage therapist, naturopath, boyfriend and other practitioners she will be trying to get to a place where she can function somewhat and start to enjoy life as she defines it for herself. Spending her life in bed is not an option.

All of you can help Erin! First by understanding the complexity of the disease by informing yourself. Secondly, by supporting those women in your life who have endo or fibro by acknowledging their limitations and supporting their abilities and integrity as fabulous people. And this month you can help by recognizing Endo survivors.

Let's make this world  a better place for my daughter and all the other young women out there who deserve more!

Confusing, Frustrating, disappointing!

Today is my wonderful and amazing boyfriend's birthday. I planned a nice lunch with his friends and got him a huge cake and some sparkling wine. It was a wonderful day, even though the day before I had an attack after having the worst service at Whole Foods. I ordered a cake a week in advance so it would be ready the day before and all I would have to do is be in and out. Lately, getting in and out is about all I can handle. I arrive and they charge me for a small instead of a large cake which I didn't realize.

After I paid they the tell me to go back in line and pay more, so I wait again. While in line I am looking at the paper which has the wording for the cake and they had spelt his name wrong to. It was a simple name and I told them five times on the phone the correct spelling.

So now they have to fix the cake. Maybe for someone else this delay would mean nothing but to a sick person like me it was exhausting. No one even appologized until I found myself at customer service complaining; they did nothing to compensate me for their mistakes. It seemed like forever and a Friday at  Whole Foods at 4 pm is literaly a nightmare! I kindly told the man what happened. He said sorry I will look into it and sent me on my way. I stood there looking at him, getting more upset due to the stress of even just planning any sort of event I began to bleed profusely - through my pants and so embarassed I am forced to run to the car.

Today is my boyfriend's actual birthday. After all these events I am now too tired to even accompany him out on the town with his friends. I feel terrible. I feel like I am letting him down. I worry what will his friends think? They are still just getting to know me.

I know he completely understands because he is a great and wonderful man who has seen what endo can do to me but most people have not. I just want to be out there with him but I cannot. This is sad.

I am 26 years old and cannot go out on the town with my boyfriend for his birthday because my body will not allow me. I so desperately want to be there with him, instead I am lying in our bed cramping, bleeding and crying from the pain. And then the disapointment that I am not normal and endo wins again.

What a life sentence. I never get a day off and I can'teven particapate in normal activities. I feel like I am a prisoner in my own body. I just so want to be there with him!

Erin Ross Coward

Confusing, frustrating and disappointing!

Wow, it has been a very long time since I wrote. 


Life has been so confusing, frustrating and disappointing. 


After months of being on bed rest too sick to function, I was given the chance to have my fifth surgery in August. I had to go through several doctors to finally return to Dr. Catherine Allaire. 


She is the best in town by the way after visiting many great doctors. After many scheduling difficulties I was given a day, which then was canceled and rebooked. To the woman who gave up her spot for me, thank you. 


I had been told in the summer I had been accepted to UBC for a two year program in the Education department in Elementary studies. I was so excited. 


I had worked so hard to get my first BA in art history and had dreamed of returning to school to become a teacher. The woman who gave me her spot saved me from having to have my surgery in the fall which would have meant I could not proceed with school and my dreams. 


Well, the day came and after five hours waiting hooked up to an IV I was told there was not enough time to do my surgery. I was heartbroken. My new boyfriend and I cried as he helped me get dressed. It felt like my life was begining to cave in on me. 


My dreams were disappearing and the thought of spending another month or two in bed horrified me. The next day I decided to just go to the ER and make them do it. I was lucky Allaire was there and I got my surgery. 


I had to stay in the hospital for a few days to recover which is usually rare. After my release I found out that I had a bladder infection and the hospital had forgot to tell me or treat me. I ended up back in the hospital. Finally I was on the road to recovery! Then another road block. 


In my first week of school I lifted a book bag which was too heavy and I ripped my ab wall near my incision. I ended up missing school and had to go back on meds. Meds in which I had worked extremely hard to get off of after the surgery. I felt helpless. I thought I was going to be kicked out of the program.


I have not yet but it is always in the back of my mind. Then my bleeding started up again. The surgery did not work. I was so upset. Most of my endo was removed except for a piece that was on my bowel. 


It was too dangerous to remove it. So now I have worry on my hands. What is wrong with me? This is not my Endo flaring up, I have been told my gushes of blood is something different. I just had my cervix cauterized, which is extremely painful. 


Again I am missing school. I am so afraid I am going to loose my spot in the program and my dream will be gone since I have a disease that I cannot control. Everyday I worry will I bleed. I have spent months thinking positive but now I am filled with worry. I work so hard at school and I never give up. 


I hope they do not give up on me. I keep trying to believe everything will work out but as some of you know, when you aren't in control of your own body anything can happen. 


-Erin Ross Coward

Erin's latest

Since the beginning of this year Erin has been living daily with severe chronic pain. She has also been diagnosed with adenomyosis which has caused a further increase in pain and bleeding. Due to thes factors she has been unable to work at all and spends a great deal of her time at home resting.

After a number of brief ER experiences, a plethora of narcotics and other drugs, along with all of the alternative therapies. she is now opting for surgery on August 17th under the skill and expertise of Dr. Allaire. We are hoping that this will alleviate the adhesions and growths from the adenomyosis and reduce her pain. Removal of the endo will occur as well.

Thanks for all of the support and I hope for a brighter future!